When I first met Laura in a yoga class, the first thing I noticed was her joyful personality. People know her for her vibrant sense of humor and enthusiasm, often amusing everyone in the room. I would have never imagined she suffered from a chronic condition. “I have fibromyalgia”, she told me one day, “and exercise helps me a lot to relieve the pain”. Only then I became aware that she was suffering from this disorder with medically unexplained symptoms that still presents significant diagnostic and therapeutic challenges to medicine.
Fibromyalgia remains undiagnosed in the majority of the people with the condition. From the onset of the symptoms to diagnosis, it takes about 5 years and this results in delayed and potentially suboptimal treatment.
How Laura was Diagnosed
In fact, Laura was diagnosed after spending several months looking for medical assistance. “This is not a well-understood disease and a lot of people are still not aware of how debilitating it can be”, she says.
Laura has been suffering from back pain all of her adult life. She was diagnosed with a herniated disc in the lumbar spine that compromised her quality of life from a young age. After she turned 50, she started to feel pain in her neck and shoulders along with weakness and fatigue.
“I felt exhausted, even if there was no apparent reason for that. It was overwhelming and constant, no matter how much I slept, I felt tired throughout the day, which limited all my daily activities – even small tasks that seem easy to everyone else were almost impossible to do”.
At first, she thought that feeling less energetic was a consequence of age, along with menopause. But eventually, the persistent widespread pain and muscle weakness forced her to request medical assistance.
Living with the disease
All her medical records were always within the normal range, it seemed there was no reason for her to feel so much pain. She says she felt guilty for not being able to do the things she used to do before. In fact, some people mistook it for laziness and most of her complaints were usually met with disbelief. She heard several people saying that her tiredness and sleepiness were a consequence of a mental condition. Until a rheumatologist gave her a proper diagnose and she had to face the fact that she would have to live with a debilitating chronic illness.
Laura says that living with the disease is hard, but she has been learning how to cope with it. “I think focusing solely on the negative points and feeling bitter only makes everything worse”, she says, “I try to accept that some days are harder than others and to adapt my daily routine in order not to aggravate the symptoms “. Being diagnosed also made her adopt healthier life choices: “I stopped pushing myself and feeling guilty all the time. I accept the fact I have to live with limitations and I must take care of myself and my body: I always sleep about 8 hours per night and exercise regularly”.
How Laura Learned to Live with Fibromyalgia
To relieve the pain, mostly on her back, she takes her medicines every day. But, she feels that often it is an exercise that works better than anything for her.
“It was the last thing I wanted to do”, she points out, laughing “when I was told in my rheumatologist’s office to follow an exercise routine, I never thought I could do it”.
In fact, several studies show that regular physical exercise contributes to improving general health. This facilitates coping with pain, fatigue and other common symptoms in fibromyalgia patients. She tried pool exercises first, as recommended by her doctor. However, she ended up preferring yoga since she feels it’s a gentle and slow kind of exercise that makes her feel comfortable. Yoga also helps to relieve tension in her muscles.
She has been in yoga class for two years and exercises three times a week now. Despite her age and her condition, she never missed a class and performed all exercises correctly with a wide range of motion. I was truly impressed!
“It’s easier when you choose an activity you really enjoy. At first, it seems too hard and it took me a long time to be where I am today but, as long as you keep practicing, you’ll feel improvements, not only in your physical condition but also in your mood”.
She joined a Fibromyalgia support groups for support and networking. She said that talking to other patients and being honest about her disease is also an important way of self-empowerment. Being part of a community or a social network for people living with chronic health problems can have a therapeutic effect on them. For the reason that people with common problems come together to support each other. They feel more comfortable discussing their situations and personal experiences with each other. Promoting dialogue and bonds of trust within the community encourages and supports self-care, helping people cope with their problems. If you are dealing with fibromyalgia, you can also join chronic pain support groups or community.
When I asked Laura what kind of advice she would give to other people suffering from fibromyalgia, she responded;
“Everyone is different and what works for one person might not suit another. I think it’s important to listen to your body and know your boundaries, so you’ll find out your own strategy to cope with the disease. It is also important to keep in mind that sedentarism will only make the pain feel worse, so it’s crucial not to give up and stay active, incorporating some activity into daily life schedule as possible”.
Laura’s perseverance is surely an example of how keeping a positive outlook on life can definitely make a difference in someone living with a chronic illness.
For greater insight into interacting with fibromyalgia patients or if you would like to chat with others affected by fibro, I highly recommend joining the app, Reachout.
Ana is a Doctor of Pharmacy currently working in Medical Writing and Healthcare Communications.